Category: Dementia

I have said for a while now that I am going through a time of things shifting for me, things changing, in many ways, those changes are unknown to me, but I feel them, at a very deep level. I am open to a shift, I am open to change, for with change comes growth, if we are willing to lean into it, to let it unfold, without having control of the hows and whens, letting things happen in the time and space they are meant too. It can be an unsettling time for many, for me it is a time of great inner peace, of being still, of allowing God ( or the universe or whatever higher power you like to liken things to), to create the new place and path that I am meant to be on.

But in the midst of all of this, I have a lot of thoughts about things going on in the world, about things from the past. It is often said that we have to let the past go in order to properly move forward, but I think that sometimes the past has to be first acknowledged, for healing to happen, to recognize it for all that it was. Whether those things are negative or positive, we may still be required to look at it.

In all of that I find myself questioning who we are as people, as a country,. How it became somehow that as humans we feel we have the right to have superiority over others, that somehow we can justify behaviours and atrocities, on other beings, that our believe system is somehow superior to someone else’s.

I think about how it could have ever been allowed, how anyone ever justified, the ripping of children from their homes, to put them into so called schools to make sure they unlearn their language and culture, that it was somehow justified to create mass graves without even having a record of who some of those placed in those graves are. They were not given proper burials that are sacred to them and their people.

I am deeply saddened by the recent events, but I am even more outraged, that for years there has been promises of change, of healing of acknowledgement of the wrongs done to the peoples who have been here longer than any of us. How is that in this day and age, we have had to watch one of our indigenous people, a wife a mother, be taunted and abused in the very medical system set up to take care of people.

How is it that for years the alarm bells have gone off and government after government, making promises, that changes would come, for our seniors, reform in long term care, yet here we are coming out of a pandemic, thousands and thousands of seniors died, unnecessary and in, in-humane ways in the very homes they were lead to believe would be wonderful places for them to live out their lives.

The bandaids have been ripped off, the wounds wide open, we as people must hold those in places of authority accountable, demand that we do not have more inquiry’s, more studies, that we actually have true and lasting and tangible change made. For our Seniors for our Indigenous People, for our Children, for our Disabled, for our homeless and our failing to do anything sustainable for those with Mental Health and Addictions.

I believe we as a country are in a great state of transition, I believe we all need to take a step back as ourselves are we willing to go with the status quo that if it isn’t happening to us directly, we should be ok thinking and behaving as if its someone else’s problem?

If we allow ourselves to be complacent then are we not part of the problem?

Should be not be demanding that our seniors be given a living wage, after all, we have somehow forgotten it is them who spent their lives paying into having a fund that would allow them a good retirement only to have it robbed by the very governments who were entrusted to ensure it was looked after for future generations, only to know say well there isn’t enough money, so that somehow makes it ok that many of our seniors go without medications, go to the soup kitchens and food banks and are becoming homeless in alarming numbers.

It makes me sad that we seem to have such little regard for human life, that we have somehow justified it because ” well I am just one person so theres nothing I can do” lets us off the hook? But what happens when its you and or your loved one? Will you want someone to do something? A question we should all ask ourselves.

Yes I believe the world we live in is shifting, I believe there is a great amount of transition happening, I wish I had the answers, but I do know I use my voice to try to make a difference whenever and however I can, I am not complacent, sometimes I am not very welcomed because I do speak out, but I will continue to speak out. I hope I can before my days are done have made some kind of positive impact.

There are a great number of good people in this world, but there are far to many that are not, power, money, egos, superiority, they feed into something that is and create so many wrongs, when in fact all of those things should be being used to do good.

This world needs to be loved, to be shown kindness to all, to be gentler, to be willing to ensure everyone stands on equal footing.

We can’t blame it all on the governments because we the people elected them, we can’t blame it all on the churches because we the people went, and followed, without question, we are all responsible, we all need to take a hard look at what we want this world to be going forward.

I don’t expect everyone to agree with my views or thoughts, they are mine, and I surely don’t have all the answers but I do know that doing nothing allows more of these injustices to continue. I just hope that maybe just maybe it will give thought to really look inwards and for us all to take a look at where we go from here.

A state of great flux… I hope, I pray, and then I pray some more.

Tonight this blog is being written after a friend that reached out to me and asked me if I could write a blog. This friend is one of our much beloved DAI members, who has recently endured a very deep and personal loss.

This friend is Maria Turner, I first met Maria in 2017 and then in person in 2018 in Chicago at the Alzheimer’s Disease International Convention. The friendship started before that when I first joined DAI, and after meeting in person and working with her on things like the Brain Health Hub, getting the Living Alone Group going along with others, and watching Maria flourish as an advocate.

I received a frantic video call from Maria a few nights ago, Wednesday March 16, 2021 actually, it took about 4 or 5 attempts before the call actually connected. But in that moment before we were even connected I new something was wrong. We all have people who we zoom or video call with on a somewhat regular basis, there is others that we chat with at times over messenger or texts or whats app, Maria and I were the ones who would send each other messages of inspiration etc. via messenger or texts, but we were not the ones to traditionally do video calls with, so when the call came I knew it would be of high importance.

Maria was distraught, her little Charlie was dying, it was heart wrenching. Charlie bundled in her arms, tears streaming down her face, asking me what to do. It was difficult to be thousands of miles away, I couldn’t drop the phone and run right over. Maria like me, lives alone. Charlie has been Maria’s everything, she knew I would understand without judgement, that I would just sit with her in those very difficult moments. I wouldn’t tell her what to do, or how, I would just be there, words of comfort.

In talking to Maria tonight when she asked me if I would write a blog, she said she remembers little, other than she knew she needed to talk to me, and that at one point she remembers me saying ” Maria Charlie has his wings know”, eventually she went and sat on her bed with him in her arms and talked, I just stayed with her until she was ready to let me go and asked me to call another of our members Karen Creeky Creekmore, so Karen and I messaged back and forth and then Karen spend some time with Maria, there were others of course who were a significant part of this event as it unfolded for Maria and Charlie, David, Jerry, Jamie, Laurie, and many others I can’t recall all so please don’t be offended if your are not mentioned here, I know Maria is deeply grateful to all.

Charlie was a puppy mill dog, who ended up in the shelter and was to be put down, along came Maria, with her big heart, taking Charlie out of his cage, and ending up saving him from his plight, only to find that Maria saved Charlie, and then Charlie saved Maria in some of her dark days. The two didn’t know they needed each other, but God knew and brought them together when they needed it the most. They were inseparable, Charlie going on many adventures with Maria, her sidekick, together they made it through some challenging times, and shared much love. They truly were a gift to one another.

Charlie also shared a lot of love, with everyone he met, whether in person or on zoom calls and meetings, Charlie always brightened everyones day, and brought out the smiles in us all. Charlie and Pheobe spent time on the zooms together too, they being so similar, in all they love they provided many of us.

Charlie has been a big part of Maria’s life and the life’s of those who saw Maria and Charlie together on Zooms, at her local P2P Groups, and everywhere in between. Together they have had a big impact on many. Everyone who new Charlie felt Charlie’s love. Charlie will be forever missed by many, but none more than Maria.

Charlie and Charlie’s love of Maria will always be, Maria will be forever grateful for her little bundle of love named Charlie.

This story is important because it speaks to the value and depth of friendships formed far and wide through support groups like those of DAI, and others, and how those relationships are not superficial as some might think, they are real, they have value, they bring value to each others live’s, not just on the good days, not just at the meetings, but far reaching across the miles, through laughter and tears, through the sharing of our beloved pets like Charlie but maybe more importantly on our very hard days, we connect with people at different levels and sometimes we don’t even understand that until in a moment we know who to call and why, God answers in our times of need.

I am very grateful that Maria felt comfortable in her ability to reach out in her moment of need, I’m glad she new she would receive understanding, compassion and love for her and for Charlie.

I know all of us will keep Maria in our hearts and think of Charlie and the smiles he brought us.

RIP Charlie – I know those wings will be helping you watch over Maria.

There are times and moments in our lives that forever are etched in our hearts and minds. There are moments that change us in ways and on levels that few understand until they walk their own journey.

It is coming up to one of the most difficult and tragic, beautiful weeks of my life, all in one week, scattered over a couple of years. Barely capturing your breath from one until the next happens. Knowing that as much as you believe in the healing powers of self care, of acceptance, of allowing yourself the right to grief, of rebuilding and recalibrating until you have forged a life that may in fact be good, may in fact be filled with many great things, there is times that take you back, to emotions, to longings to reviewing, to rethinking.

It is not about being depressed, no I am not depressed I am deeply sad, there is a difference, sometimes they are intertwined sometimes they are completely different things, in this case they are totally different things. I can say that I am deeply sad at the very deepest levels, missing some very important pieces of my life, I am allowing myself to sit in this sadness, to feel it, to think about it, all of it, to think about how it has effected me, about what parts and pieces I miss the most. I am allowing myself the time and space to feel it all to remember it all, I am giving myself space to re- emerge, feeling reenergized, reinvigorated, but I cannot get to that space without first allowing myself this space.

In a five day span, I deal with the wedding anniversary to the man, the one person, who in my life, loved me selflessly, wholly. Who accepted all the broken pieces and parts of what makes me, me and he loved me that way. He loved me deeply, he was my best friend, my confidant, his love for me knew no bounds, nothing anyone said or did could impact his pure love for me. I blossomed with his love, I lived the best parts of my life with him. I loved him as wholly as he did me, I would and did go to no ends to be there for him and with him. I love him today just as wholly today as I did when he was still here in the physical world with me. I still feel his presence often, I still know he is with me, I know with all that I am that we will be reunited when it is our time.

But even in knowing that, even having peace in the fact that he was called home far sooner than he or I could have ever anticipated, having peace in knowing I did all that I could to ensure his end of life is how he wanted it to be. Even in knowing all that, as I approach the week that is fast approaching, I settle into this profound and deep sadness. I think about all the little things I miss, the little things, no one really knows, the little things about like that one of our favourite and special moments of shared conversations or solving concerns, of making plans was in the shower, with water falling around us. It created a space that we loved, the water warm, relaxing us, allowing us to share those intimate conversations, maybe thats why my love of water is so deep and I’m always searching for waterfalls. I miss sitting at the top of Canoe Mountain where his ashes are spread, and his head stone rests, I am needing a trip up there so badly, we used to take a thermos of coffee and sit at the top of the mountain on the back of the truck having coffee, looking in awe at the wonder of all that stretched before us, sometimes we just sat not talking, just sipping coffee, holding hands, I miss feeling the touch of his hands, that were strong, and yet so gentle, the sparkle of his crystal clear blue eyes., I miss going to sleep each night enveloped in his arms, knowing as he always told me that as long as we were together we would get through anything, it was the safest, happiest place I have ever been. It was the deepest connection I have ever had to another human being and I long for that connection, I miss that connection, and it doesn’t matter how many years go by and this year will be 16 years since he left this world, I miss that connection, so deeply. I would Marry him a thousand times over given the chance, but I know that we are married forever, and on the other side of this life our life together will once again be. Our Anniversary is June 7th, he died June 12th, the best day melts into the worst and yet I cherish every moment, every memory.

I find it hard because as much as I want to remember and cherish our life, not many people are comfortable talking about those pieces of our lives.

The other big event for me was the loss of my mother, 2 years after my husband, I had not yet found my footing from his loss, when I lost my mother. The one woman who influenced and impacted my life more than any other person. Her strength and resilience was beyond measure, and without her willingness to share and teach me about that I likely could not have managed through the loss of my husband and then her. She was kind, generous, funny, she had a great spirit, she was forgiving, non judgemental, and she was always giving of herself to help make others lives better. She graced me with spending her final time in life with me, and when she wanted to die at home, I said OK, and with the help of my doctor it was like she was allowed to orchestrate her exit from this life into another on her terms. I did everything I could to ensure it happened, from having a choir coming in to sing hymns with her and surrounded with family and friends, it was a special time, one forever etched in all those who were witness to it.

I miss all the special times with her, taking her to garage sales, to teas, traveling the highways to go see family and friends, to Helmut’s (a german specialty store) for all the good german products, she would get so excited to get. To laughing so hard she would say stop stop I’m going to pee my pants, and then laugh some more, watching her face after seeing be reunited with my sister in Germany after 28 years, sharing the journey with her and letting her show me and share with me her home country. It was a trip that had a lasting effect on me, and I hope to return again one day. Watching her face lit up when she was surrounded by those she cared about. I miss the conversations about the hard parts of life, I miss how she pulled us all together, I miss that connection, that very special connection, I miss the friendship I had with her, I miss having her never ending supply of filling me with a sense of pride and ability in myself when I seemed to lose it. I miss her so very deeply. I remember in those final days, as they etched closer, one of our conversations, she said, I’m going to go soon, I said I know mom, its ok, and then I said, just promise me you won’t leave me the same day Uwe left me, I can’t manage that, she said I know, and she didn’t. My mother never let me down, I’m sure I let her down at times, but she never let me down. Even at the time of leaving this world she didn’t.

Mom died on June the 9th, peacefully and content, all my doors and windows open, as she wanted because she said her spirit needed to be able to be free, she didn’t want to get trapped in the house, and I know when her wings given granted she soared free, and I know she watches over me, she guides me, but I still miss her presence in my life.

I normally have always taken that week and gone away and done and spent some special time, last year I couldn’t because of the pandemic, this year again I cannot, so I am looking at the ways that I can ensure I still give myself the time and space to feel the sadness, to smile, to laugh and cry, to remember.

And maybe because of the pandemic, I’m not really sure, but I know that in this sadness it has really made me see how alone I am in this world, how I know so many, yet I am alone, without that very important connection with another human being like I had with my mom, and my husband. It’s ok that thats how it is, I am and have just become more aware. I seem to have become more aware of many things on a much deeper level. Maybe thats what one must do in order to continue to grow.

So as I move through to what will be a difficult stretch, but coming out the other side lighter, softer, gentler, growing in ways I have yet to see. I will always be grateful that I have had the experience of that deep connection and love I had from my husband, and that complete love and joy from my mother.